Simon's Debut!

DISCLAIMER: You guys know me. I’m normally very upbeat and positive, right? It takes a lot to get me down. Well, I am officially down. These past few days have been the most challenging days of my life thus far. The scary thing is, I’m sure I will face even more challenging days in the future. But, for now, I am wrecked. I’m drugged, sore, swollen, tired, and confused… and so is my precious little boy.

I do want to compile our experiences in one place so everyone has a chance to see what’s happened and what we’re looking ahead to. Otherwise, we’d end up repeating ourselves a million times, forgetting details and getting aggravated. So here’s our ridiculous tale! Please forgive me if this post isn’t nearly as easy to read as the others!

My water broke at 11:30pm on Saturday the 12th. Surprise!! I stuffed a towel between my legs, we drove the hour to the hospital, and I was in active labor by the time we arrived.

I thought Simon was all snug as a bug in there! I still had a good cervical length as of the 7th! Well, no. Simon is in charge, and he actually had a great reason for coming early.

Nurse: “What color was your water?”

Me: “It was dark yellow.”

Nurse: “… okay, let’s get started.”

The next hour was insane. Simon’s heart rate plummeted for a few minutes, and the nurses were rolling me around, trying to get him back. He came back just fine. There was an oxygen mask, three unsuccessful attempts at an IV insertion, contractions I could not talk through, an injection to chill those contractions, prep for the magical spinal block, and me not knowing what the hell was going on the ENTIRE TIME.

The C-section was quick and efficient. Dr. Cacciatore and the rest of the team were delightful. While he was hard at work, he said that I would be a great candidate for a VBAC in a future pregnancy! He said most likely, spina bifida won’t happen again (yeah, we’ll see) and my pelvis is “roomy” enough for any sized baby. Plus, my labor progressed super fast, so a vaginal delivery would probably be over and done with pretty quickly. When he checked me after a particularly bad contraction, I was 5 cm dilated, 100% effaced, and he was able to touch Simon’s head. I was 7 cm by the time they finished the spinal about 20 minutes later. He was ready to go.

Again, ENOUGH about me! It was Simon who turned my water dark yellow. Apparently, it’s supposed to be clear. The yellow color meant that he made his first bowel movement in-utero, sometime before or during labor. Not all babies do this, but unfortunately, he inhaled the poopie, resulting in meconium aspiration syndrome. He came out crying, but it was hard to hear through his gurgling and choking. That was SUPER sad… they had to whisk him into the NICU immediately to clear his lungs, so I literally didn’t even look at him until I was out of recovery at like, 6 am.

Our beautiful, poop-inhaling son was born at 2:10am on January 13th, 2013.

Meeting Simon for the first time. We both look so glamorous.

That beige wrap around his head is holding a CPAP breathing device on his little face, since the meconium in his lungs was causing him respiratory distress. But, he is a champ and was able to clear a lot of that gunk out and eventually was able to be switched over to the little breathing tube that has the 2 prongs that go in your nostril. I don’t know what it’s called. DEAL WITH IT.

Smiley Simon with the CPAP.

Sleepy Simon without the CPAP.

He hated the CPAP and fussed about it a lot. He kept tugging at it, along with his feeding tube. He just wasn’t feeling it. I wouldn’t either! Look how obnoxious that stuff looks!!

Originally, his lesion closure surgery was supposed to be 24 hours after his birth. Since he changed up the schedule, we were unsure as to when it would happen now. Turns out, the meconium inhalation and other neurosurgery scheduling conflicts have made it impossible for him to have his surgery before this Thursday, the 17th, at 8am. It’s been officially scheduled at that time. It is dependent on Simon getting a successful MRI done of his spine… they tried it once, but he was too wiggly. Again I say… DUH! He’s a wiggly little baby! And, he’s related to ME! We’re insane!! You want him to stay still for an MRI!? They gave him a little Ativan to calm him down, but he needed more, obviously. I could’ve told them that.

The neurosurgeon (Dr. Trumble’s partner, Dr. Baumgartner) says that his lesion is small and manageable and will not be at significant risk of infection for a week. I believe him, of course, but I definitely wanted the surgery to be done earlier. It’s not an emergency, but it’s certainly necessary. Dr. Baumgartner’s PA told us that Simon will have the surgery, and then be on a 3-day post-op watch where he needs to remain on his belly and be carefully monitored. If he is recovering well – not leaking anything from the lesion site, breathing normally, eating, etc. – then he can be held after those three days. Which means, the earliest I can hope to hold Simon is Sunday the 20th.

HE WAS BORN ON THE 13TH, PEOPLE. OMG GIVE ME MY BABY ALREADY!!!!!

Seriously can’t explain how badly I want to hold him. I may never put him down.

Other news: he is pooping and peeing regularly! He hates having a wet diaper and lets everyone know when he’s uncomfortable. This is a great sign for his bladder function so far. I am keeping in mind, however, that the closure surgery may cause some setbacks in his urological function. He also still does not have hydrocephalus. Again… the closure surgery very often results in a shunt. Dr. Baumgartner told us that 97% of SB kids need that shunt eventually. But, he will NOT put the shunt in at the same time as his closure surgery since he does not currently have hydrocephalus. It is entirely possible that he will need one placed during his 3-day watch, later in the week, or in the next few months.

I DON’T CARE JUST LET ME HOLD HIM BEFORE THAT HAPPENS.

He smells so so so good. How do babies smell so amazing??

He had been fed intravenously with lipids etc., but after asking them about it today, he’s been eating my breast milk through his tube! My milk hasn’t actually come in yet, so it’s just a little bit of colostrum that they’re supplementing with formula, but still. It’s very exciting for me, and very VERY good for his little immune system.

My first Simon feeding! Not traditional, but I’ll take it!

His ankles do have some orthopedic issues, as expected. His feet flex all the way up to his shins – further than they should – and he can’t point his toes. If that’s how it stays after his closure surgery, then it’ll be dealt with through physical therapy and some AFOs. Again, totally expected and it honestly didn’t phase me. Hopefully the closure surgery doesn’t mess with the nerves that are intact. It’s possible that he may lose some function down there, but everyone is hopeful that he’ll at least maintain his current abilities.

His eyes are puffy and a little swollen for various reasons. Excess fluid, pressure from the stupid CPAP, and being limited to laying on his belly. He opened one of his eyes just once at me and Jason and we both almost exploded with joy.

Oh, and one more thing… one of his testicles is undescended. Because why not? This poor kid really needs another issue to deal with. It’ll probably drop on its own. Unfortunately, it’s the least of his worries. Oh, Simon.

I had no idea how physically attached I would be to this baby. I know it’s an obvious thing, and mothers will try to explain it to you, but it makes no sense until it happens. Anytime someone comes to talk to us about his status, my uterus contracts and my whole chest gets warm and tingly. I literally cannot think about anything else but holding him. Thinking about that is the only thing that allows me to fall asleep.

That’s the long and short of it, for now! There’s more but I don’t remember it, currently. You’ve all been so supportive and sweet throughout our journey with Simon. Jason and I have no idea what we would do without your kind thoughts and the support of our ridiculously amazing families.

I’ll keep everyone posted about his progress and surgery and whatever else is happening. I don’t know what’s happening. I don’t understand how we got this far and how our love for this child grows with every passing second. I’m so proud of him. I’m so upset that he has to start his life this way. I’m so hormonal. My ankles are so swollen.

Gotta go. Lots of love to all of you